Leukemia Diagnosis; April 27, 1987

Posted in Cancer, Journal, Leukemia with tags , , , , on April 27, 2016 by Nancy McLeod

I had a pretty good sleep. Alex woke up a few times in the night.

The nurse came for blood around eight o’clock and then breakfast came. They gave Alex a shot around eleven o’clock. The nurse said he’ll have to have a shot three times a week.

Mom and Dad came in the afternoon. I went to their house and made a few phone calls. I phoned Dr. W (our md) to tell him the results but they couldn’t put me through. Then I phoned Nora, I found that really difficult telling her. I almost broke down and cried. I phoned Joan and I was able to keep myself in control. Being as close as we are I was able to tell her a lot which eventually helps to relieve some of my pain.

I went back to the hospital around five o’clock, Charlie had gone to work.

We got ready for bed around nine o’clock.

Tests

WBC .7
HGB 8.2
Platelets 11,000
ANC 126
Blasts 0

009

Leukemia Diagnosis

Leukemia Diagnosis; April 26, 1987

Posted in Cancer, Journal, Leukemia with tags , , , , on April 26, 2016 by Nancy McLeod

What a night I had. Alex woke up at 12:30 a.m. and decided he wanted to talk. He kept me up until four a.m., I finally fell asleep and then around 4:45 a.m he woke me up , I looked at his I.V. machine and there were no lights on it. I called the nurse and she said oh it’s probably because it’s not plugged in. She then looked at it and said oh shoot. She turned to Alex and asked him if he turned it off and he hid under the covers. I finally got out of him that he had decided he didn’t want anymore medicine so he turned off the machine. After that we both fell asleep.

The nurse came around eight o’clock for blood work and then we had breakfast.

I was so tired I felt ill. Alex’s I.V. stopped functioning just after eight o’clock and they had to put it in another spot. I told Alex he shouldn’t have turned the I.V. machine off, if he had left it alone he wouldn’t have had to have another poke. The nurse said I shouldn’t have said that but he has to understand the reason they had to change the I.V.

Since Friday Alex has been taking Prednisone three times a day. The nurse let me sample a drop to let me see how terrible it was and it was disgusting! No wonder Alex hates it.

Mom and Dad came in the afternoon and sat with Alex.

Shirley came in the morning but she had to meet someone so she didn’t stay too long.

Charlie and I came home. I worked around the house and had a shower. Then we went to Toy City and bought Alex a couple of cassette tapes. We went for dinner and were at the hospital around six o’clock.

Alex’s legs are still bothering him.

Charlie stayed until eleven o’clock, I was so tired I didn’t even know he had gone I was fast asleep.

Tests

WBC 6
HGB 9.5
Platelets <10,000
ANC 60
Blasts 12

009

Leukemia Diagnosis

Leukemia Diagnosis; April 25, 1987

Posted in Cancer, Journal, Leukemia with tags , , , , on April 25, 2016 by Nancy McLeod

Alex is still waking up in the night crying. He wants me to hold him. I usually leave my hand on his chest and he feels much better. Alex usually soaks the bed at night and I have to get the nurse to come and help me. The whole bed needs to be striped down. This is because he is on an I.V., it’s a lot of fluids for a little body.

The nurse came to take blood and then breakfast came. Alex is still not eating very much. Shirley phoned around ten o’clock and said she would try and come up.

Charlie figured Shirley could drive in, take me home and we would both drive back if she wanted to come in. Then Charlie could stay with Alex and I could have a nap at home. Charlie phoned Mom to tell her that they didn’t need to come and he told her the plan. She told Charlie to tell me to phone back in 30 minutes.

I phoned back and she said she didn’t understand what Charlie was talking about. So I explained everything and she said well we are retired and then she went on to say if we’re not wanted or needed that was fine!

I told Charlie and said you better phone Mom back. He did and Mom and Dad came around one or two o’clock. Charlie, Shirley, Brent, Monique and myself (they came around twelve thirty) went home in Charlie’s car as Shirley wanted to leave her car in town.

Charlie dropped me off and drove Shirley home. Brent was sick first at the hospital and then in Charlie’s car. Brent was having trouble dealing with Alex’s illness and he made himself physically ill. Shirley said he’s had a weak stomach for along time and when he gets upset he throws up.

It sure was depressing being in the house with no one. Kelly (our dog)was at Mom and Dad’s since Thursday so the house was empty. I didn’t do much I just wandered around the house. I phoned Joan but she was out. Then I phoned Blair, I found it very hard to keep in control. I told Blair I had to catch my breath as I was sure I would break down.

Blair was quite sympathetic which helped me and made me feel better. Charlie came back and I then had a shower and got dressed. I called Shirley around four o’clock and said I would pick her up shortly.

I picked Shirley up and we were to meet Charlie for dinner at P. J. Cafe. Shirley said Charlie talked all the way home last night, which I was glad as I was worried he wouldn’t talk to anyone about it. It really helps in this kind of situation to talk to people about Alex and his condition.

We got to the hospital around six o’clock. We just missed Jeff and Martina. They brought Alex 6 balloons, Alex sure was happy to have so many balloons. Mom and Dad left and Shirley and I sat with Alex while Charlie went to the parents lounge.

Alex’s legs are still bothering him. All we can do is rub his legs, use the hot water bottle and give him Tylenol.

Shirley left around nine o’clock, Charlie left around ten or eleven o’clock. We got read for bed.

Tests

WBC 3.4
HGB 11.0
Platelets 22,000
ANC 391
Blasts 1785

009

Leukemia Diagnosis

Leukemia Diagnosis; April 24, 1987

Posted in Cancer, Journal, Leukemia with tags , , , , on April 24, 2016 by Nancy McLeod

The nurse comes to take blood, we’re not even out of bed yet. Alex cries and cries and there is nothing I can say to help him.

Breakfast comes around eight o’clock. Alex hasn’t been eating very much he just picks at his food.

We’re waiting for the test results. My stomach is in a knot, my jaws been aching for days. I’ve started to get a headache.

Mom and Dad come around two o’clock.

Charlie and I are at their place and we’re just about to have something to eat when Dad comes home. He tried to call but the phone at the hospital is not working.

Dr. R wants to talk to us about the test results. So we all go back to the hospital. Dr. R takes us into his office and tells us Alex has Acute Lymphoblastic Leukemia. Alex has a 95% chance of being cured and a 60% chance of the Leukemia coming back. Dr R then says because Alex’s white blood cells are so low he cannot go to public places such as malls, restaurants, etc for one year.

Dr R hands us a little booklet explaining the treatment and asks us to read it through. The doctor also states that Alex can be put on a research program and that the treatment is the same for the research and the non research.

The clinical nurse then introduces herself to us. Her name is Rene and she is there to help the children get through their ordeal. If we have any questions, she is there for us.

Dr. R comes back and tells us if at any time we want to take Alex out of the research program we can.

Dr R and Rene leave, we read over the treatment program. After we finish reading, I look for Dr R but he isn’t there so we go back to Alex’s room. We tell Mom and Dad the results. Dr R comes to Alex’s room and we sign the papers.

Mom and Dad told us to go for dinner as it is now about four thirty. When we come back Alex has already had his chemotherapy. They had to take his I.V. out and put in another one. Alex was crying when we got back, when they started the chemotherapy it burnt his arm going in.

Alex also has leg pains which seemed to have started about the same time. Alex was given Tylenol and we got a hot water bottle to help relieve the pain. He also wants us to keep rubbing his legs.

Lucy and Shirley Chan came to visit just after we came back, we had met them at the mall. It’s really difficult telling people about Alex and his condition. People always ask so many question it’s hard to answer everyone. Lucy asked if the dog bite Alex had when he was 2 years old had anything to do with Alex getting Cancer. I found that quite upsetting. It makes me feel like it was my fault.

Shirley, Aaron, Brent and Monique arrive at six thirty. Alex didn’t want to talk or do anything with Brent as he was just getting over the pain in his legs. Charlie and I had to keep rubbing Alex’s legs. If we stop he cries and yells.

Aaron, Brent and Monique went home, Shirley stayed with us. Charlie went into the parents lounge while Shirley and I sat with Alex. Shirley is the only one I can tell how I feel about everything. I really don’t know what I would do if I hadn’t had Shirley as a friend. She’s been there when I needed someone.

Shirley stayed with Alex while I got ready for bed. I told Charlie to go home around eleven o’clock. Charlie drove Shirley home. Alex and I went to sleep soon after.

Test results
WBC 19.0
HGB 7.5
Platelets 76,000
ANC 824
Blast 13,173

009

Leukemia Diagnosis

Leukemia Diagnosis; April 23, 1987

Posted in Cancer, Journal, Leukemia with tags , , , , on April 23, 2016 by Nancy McLeod

Alex didn’t sleep very good, he kept on waking up and crying. In the middle of the night Alex asked me to sleep with him in his bed.

The nurse came at seven thirty in the morning to take blood from Alex. He cried and cried, it sure is upsetting to see him like this.

Breakfast came around eight o’clock. Before Alex had breakfast he had a sedative to make him drowsy for when he has the bone marrow and the spinal tap.

A nurse took us downstairs for an x-ray of Alex’s chest. After ten o’clock we went into the treatment room. Dr. L a child psychologist helped Alex and myself get through the ordeal. She also explained the procedure and what it involved.

It sure is difficult watching Alex. One nurse held Alex quite tight while the doctor worked on Alex’s back. They had to freeze the spot for the bone marrow needle, the needle did hurt him when it went in. Once it was in it didn’t hurt, it was just uncomfortable.

When they did the bone marrow test Alex got himself into a rage and he started biting and hitting me. Dr. L calmed him down and talked me through it all. I must of cried through the bone marrow and the spinal tap. I was so upset at seeing Alex what looked like to me, to be in pain.

Charlie didn’t stay he said he couldn’t stay and watch when Alex was screaming so much. I stayed because I felt Alex needed one of his parents there. The procedure took an hour and half to do. We took him back to his room and he slept most of that afternoon.

Mom and Dad came and sat with Alex while I went to their place. Charlie had gone to work. I was thoroughly exhausted from Alex’s bone marrow and spinal tap. So it sure was good to have a break.

I came back around five o’clock, Mom said Marla came up. Marla gave Alex three presents and one was from Coral. Marla gave Alex a box of 72 crayons, a toy airport and a potato head kids game. Coral gave Alex a sticker book and Mr. Potato Head.

Shirley and Brent came to the hospital, Brent wanted to see Alex. Brent was pretty upset at seeing his friend so sick. With Alex having the sedative for the bone marrow and spinal tap, he was pretty tired. Alex kept on getting mad at Brent because he kept on touching Alex’s toy cars. They stayed for a few hours and left.

I started getting ready for bed at nine o’clock. It’s really hard for me to get to sleep. When I do go to sleep I wake up through out the night for no reason. It’s hard getting use to Alex having Cancer. I can feel myself about ready to breakdown and cry. I keep wondering when I’ll be able to control myself again, as I’m not an emotional person.

009

Leukemia Diagnosis

Leukemia Diagnosis; April 22, 1987

Posted in Cancer, Journal, Leukemia with tags , , , , on April 23, 2016 by Nancy McLeod

We are all totally exhausted. We just can’t believe that our child would get Cancer. He’s only three years old and I still think of him as my baby.

Charlie had phoned Mom and Dad last night. He also phoned Shirley and asked her to come and keep me company whenever she was free. Shirley phoned me back around six o’clock in the morning, wondering how I was. She said she had the day off and would be there as soon as possible.

Shirley arrived around seven o’clock. We talked about Alex, I had a lot of trouble keeping myself in control. She was a great strength to me and helped me be strong for Alex.

Dad phoned around nine and asked how I was and I broke down. They came not long after, it sure was good having them there.

We waited until about two o’clock before we were told that there was a bed at Children’s Hospital. Not long after Alex and I rode in the ambulance.

The paramedics took us upstairs to the Cancer ward. It was rather shocking to see all the sick children, most of them have no hair. When you’ve had such a healthy child and he becomes sick so suddenly you go into shock.

The nurse Nona was really good, she got Alex settled in really nicely. She said she would wait until he got use to his surroundings before she would attempt to do anything.

Dr L came and talked to us. He wanted to get the family history.

Mom, Dad and May came just when we arrived at the hospital.

Dr R came and checked Alex. He said Alex would have a bone marrow and a spinal tap tomorrow.

May left and said she would come back later tonight.

The nurse came and checked his I.V. she was surprised at where the nurse at the other hospital had put it.

There was no way I could go home. Charlie wanted to stay with Alex but we asked Alex and he said he wanted me, so I stayed with him.

May came back around ten o’clock and stayed with me. Charlie went into the parents lounge.

Charlie and May went home around eleven o’clock.

The nurse brought me a sofa chair to sleep on. Alex’s bed is in a four bed ward, his bed was right beside the washroom. I feel like we have no privacy. When I pull the curtain, Alex’s bed has some privacy but the sofa bed was almost on the floor so it didn’t give me much privacy.

Alex’s test results were White blood count 10.6, Hemoglobin 7.1, Platelets 14,000, Absolute Neutrophils Count 901 and Blasts (amount of cancer cells) 5512

009

Leukemia Diagnosis

Leukemia Diagnosis; April 21, 1987

Posted in Cancer, Journal, Leukemia with tags , , , , on April 21, 2016 by Nancy McLeod

My husband and I took Alex to Dr. W. today. Alex had two colds and a third cold was starting. He had become very clumsy and had a lot of bruises on his body. Alex’s skin coloring had become very pale. He also was very tired and needed to be held all the time.

After Dr. W checked Alex he said he thought Alex’s blood count would be very low maybe around 6 and it should be 12. The doctor could feel his liver and his spleen.

Dr W said Alex was very sick and within the next twenty four hours we were to take him to the hospital. Dr O would check him and do some blood tests.

We took Alex to the hospital not long after we saw Dr W. Once we were upstairs in the Children’s ward, I had a hard time controlling my emotions. My husband, Charlie* said “What’s wrong with you, Alex is just having a few tests.” I didn’t like to tell him but I feared the news would be bad. How could I say I fear he has Cancer? How could I his mother think that?

Between 6 and 6:30 pm, Dr O came to tell us the results of the blood test. Charlie had gone to the cafeteria. Dr. O said he would come back. Dr O came back about 30 minutes later. He told us the blood test showed that Alex and Leukemia. Charlie said “I don’t think I heard you correctly.” The doctor said “Your son has Leukemia.” I felt like I was having an out of body experience. I went numb and felt like I had floated to the ceiling. I was now looking down at myself, Charlie and the doctor.

At nine o’clock the nurses put and I.V. into Alex’s arm. It took four tries before the nurses were able to get the needle in okay.

It was a terrible night, Alex woke up about every hour screaming. He was having nightmares about being poked by the nurses.

Dr. O told us Alex would be transferred to Children’s Hospital tomorrow and they would do some more tests. A bone marrow test would confirm that Alex has Leukemia and would also tell the strain of Leukemia.

Dr. O said Leukemia has a 90% chance of being cured.

* the name has been changed

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Leukemia Diagnosis